Hi, everybody:

I have an adopted two-year-old baby boy, who is the treasure of my life.

My son had Cystic Fibrosis. Some time ago, he had a transplant of one heart, two lungs, and two kidneys. These transplants were not realized in the USA or in Europe, but in another country. I know it is normal for persons (children and adults) to have transplants of one heart and two lungs when needed but, just for your information, I would like to explain you why my son had a transplant of two kidneys, instead of one, as is always the case for everybody. My child was born with two kidneys, so I want him to live with two kidneys, especially considering the fact he has to take many, many medications (including immuno-suppressants) for the rest of his life, so I believe he needs his two kidneys instead of just one, to clear the metabolites of his medications better. Of course, other transplant patients can and usually do live with one kidney, because the other donor's kidney is needed for another patient. I realize another patient could have obtained this second kidney, but I will admit my priority is my beloved baby.

I have several questions:

1) When my son gets older and is old enough to understand, how can I tell him about his past disease and his transplants, without traumatizing him?

2) When my child knows about his past disease, how to reassure him he will not get it again?

3) When my son knows about his transplants, will he accept his new organs as his own or will he psychologically reject them as not being his own?

4) How to help my child accept his transplanted organs as his own?

5) Will my son's transplanted organs (heart, lungs, kidneys) last for the rest of his life or will he, someday, need another transplant of one or all of these organs?

6) If my child, someday, needs another transplant of one or all of these organs, how will I and his surgeons know about it so I can look for these organs again, with the help of one friend and of his biological grandparents?

7) Will my son have to take his immuno-suppressants for the rest of his life?

8) Are there books or web sites to help children understand Cystic Fibrosis and organs transplants?

Thank you so much for sharing your experiences about your child's Cystic Fibrosis and organs transplants, if one of your children went through this experience. If it is emotionally too painful for you to write about it, I will understand if you prefer to keep these experiences for yourselves.

Thank you also for your information.

Where is everybody? Why no answer? I am sure there are other parents whose child has gone through this. Where are they all? In vacation?

Hi, everybody:

*edit*
Do you know of any forums for Cystic Fibrosis children who had transplants at a young age? I feel really, really bad not getting any answers, even if I do realize this forum is not very busy. I believe some parents (with their family, their friends, their coworkers, their neighbors, or some of their acquaintances) using this thread about children's health must know someone, even if it is only one person, who has a child with Cystic Fibrosis who can give me some help or advice. After all, Cystic Fibrosis is not that rare a disease; it is even more frequent than RSD for example. RSD patients get answers, so why not Cystic Fibrosis patients and their caregivers, when these patients happen to be children? Please, someone, help my baby! It is not because my baby had transplants that he is out of danger. After all, while taking immuno-suppressants, he could easily catch a microbe, virus, or parasite that would kill him in a cinch because his immune system is suppressed.*edit*

[Chemar]

hello Kitty

You may want to consider a pediatrics website with support groups/forums as our children's topics are not very active here.

I am sorry your child is suffering

Do remember that just because there are no answers here, does not mean people do not care. It is that most do not visit this Children's Health forum often, if at all, and those who do, may just feel overwhelmed by the enormity of what you describe and just simply not have any information to share. As you know, these forums are generally for patients to offer support and share information, not for professional medical assistance. That is something you need to consult your child's physicians about

I do hope you find a place that may have parents who can support you and provide information.

Hi, Chemar:

Thanks for your answer and information.

In the past, my baby used to laugh so often. Now, he barely smiles. The other day, I showed him, with my satellite phone, your picture with the cat walking in front of the German shepherds af if they were not even even there. For once, I heard him laugh. It is so wonderful hearing him laugh, even if it is not often these days.

Do you, by any chance, know of any books or web sites containing pictures as funny as yours, whether it is about animals or something else? I think they would help put a smile on his face.

I just do not know how to make my baby laugh or smile anymore. In the not so far past, I consulted several children psychiatrists for him. All they could do was to offer anti-depressants for him. I know that when I took some anti-depressants, they did not help me in any way, even though I took them as prescribed, at the highest dosage and for a long enough time. I am afraid the same thing will happen to my baby. The children psychiatrists all told me it is very hard for any physicians to help my baby physically or psychologically, whether these physicians are children psychiatrists, pediatricians, surgeons, or some other kind of physicians, because it is extremely rare for a child this young to find a donor and have a successfull transplant (one heart, two lungs, and two kidneys).

I will try to google or yahoo "Cystic Fibrosis children forums". Hopefully, there will be some forums with parents whose children already went through what my baby is going through and recovered successfully and these parents will be able to help my baby, if not physically (because they are not physicians), at least psychologically. Thanks again.